Supporting the

Neuroendocrine Cancer Community

FAQs & Archive

Before committing to participate in a trial it is important to think very carefully about what the trial will mean to your lifestyle.

Taking part in a clinical trial can be a big commitment – with more travel to the hospital than normal, extra tests, scans, and an increased number of appointments.

Whether you decide to take part in a clinical trial or not, you should receive the highest standard of care and support available.

What are the advantages?
  • You might be able to have newer and more effective treatments that aren’t available outside the trial.
  • You will be helping to improve future cancer treatment for others.
  • You may feel you’re doing something positive about your health and taking an active role in your treatment and recovery.
What are the disadvantages?
  • You may have more frequent testing as well as treatment, which might be inconvenient. This can go on for a long time. Some people also find this makes them worry more about their cancer.
  • You might not know in advance about all the possible side effects – the researchers themselves might not know them all yet.
  • If the trial is randomised you won’t get a choice about which treatment you have.
  • If the trial is blinded, you won’t know which treatment you are getting.
  • The new treatment may turn out to be no better than the existing treatment.
  • There is the risk that the new treatment may not help you, even if it helps others.
Are clinical trials safe?

In short yes, although you might still experience side effects from the treatments that you receive on the trial. The running of clinical trials in the UK is strictly regulated – to ensure physical and mental health safety – and also that ethical standards and professionals practice standards are maintained throughout your clinical trial experience.

Ethics committees must approve any trial to decide if it is safe, planned correctly and the researchers are qualified to carry it out. If you decide to take part in a trial you should be told about the specific advantages and disadvantages of the trial. You should also be allocated a research nurse or clinical nurse specialist who you can contact with any concerns.

If I go on a trial, how likely is the treatment to work?

No one can know for sure what the outcome of trials will be. Often the new treatment is tested against the standard treatment (or rarely a placebo) depending on which group you are allocated to. So being on a trial does not guarantee you will access a new treatment.

The standard treatment may prove to be better than or just as good as the treatment being tested or the new treatment may show to have unexpected side effects.

Your research team can talk through any concerns you may have and help you decide whether taking part is right for you.

The underlying goal of the trial is to improve care – whilst maintaining your safety at all times. If during the trial it becomes obvious that one treatment is much better than the other – the trial may be halted or all participants may be offered the better treatment for the rest of the time of the trial.

What is placebo?

Some trials compare a new treatment with an inactive drug or treatment called a placebo. You may have heard it being called a “sugar pill”. Placebos are used to rule out patient bias in trials. Many of us can feel better if we believe we have taken something to make us feel better. Even if we’ve only taken a tablet made of sugar. This is called the placebo effect.

A placebo-controlled trial compares a new treatment with a placebo. The two groups of patients then can’t be biased, because they won’t know if they are getting the placebo or the new treatment – for example :

Group A – placebo

Group B – new treatment

If you are considering participating in a clinical trial ask your team whether it involves the use of a placebo and the likelihood of receiving the drug being studied or a placebo. Also, ask whether there will be an opportunity to receive the study drug at any point in the trial.

Please note that many clinical trials now offer you either best standard care +/- new treatment – for example :

Group A – best current treatment

Group B – new treatment

OR

Group B – best current treatment + new treatment

If however best current treatment would be surveillance only – then a placebo may be used to minimise bias.

Can I stop the trial at any time?
Yes, you can. You can leave the trial at any time without giving a reason. But if you’re happy to give a reason, it could help the research team design better trials in the future. If you leave the trial you will still be offered the standard treatments for your stage of cancer. Health professionals won’t treat you differently because you’ve left a trial.
Tissue and blood sample storage / biobanking

Storing tissue and blood samples for use in research is called biobanking. You might be asked if a blood sample or a biopsy of your tumour can be stored in this way. Sometimes the health and well-being of volunteer participants might be followed up with surveys, but often you will only be asked to give a sample.

Biobanks aim to improve the prevention, diagnosis and treatment of a wide range of serious illnesses, including neuroendocrine cancer. It allows scientists to better study the cells to understand how our genes interact with our lifestyle and environment to cause disease. It may also provide new ways of treating diseases, or spotting them earlier.

Drug repurposing – giving drugs a second chance

To re-purpose is to “ adapt for use in a different purpose.”

New treatments for neuroendocrine cancer can be difficult to discover or develop, so it is important to be aware of all the different ways that therapies might become available in the future. Repurposing means looking at existing drugs and therapies to see if they could be new treatments for cancer. Significant savings can be made in time and money because typically, the safety, efficacy, and toxicity of an existing drug have already been extensively studied. One example of successful repurposing is thalidomide, previously used for morning sickness, now used to target multiple myelomas (another group of rare cancers).

Repurposing medicines in the NHS in England

Read more: The Redo Project here and Findacure here.

What are the main areas of Neuroendocrine Cancer research in the UK?

At any one time, there are many studies underway in the different fields of healthcare around the UK. Some of the main studies in laboratories are focusing on better understanding the genetic and immune landscape of neuroendocrine cancer cells.

Looking at current treatments in new ways and evaluating whether there is a difference in outcome depending on the sequence treatments are given in, is another area of study.

There are also some trials in imaging looking at new tracers to further improve the images in PET scans (nuclear medicine initiatives)

Information on current and published trials is available here.

For further information on Research – visit the NIHR website here.

ARCHIVE

Research Articles and Publications

RESEARCH SPOTLIGHT MARCH 2021

Clinical Trials in Neuroendocrine Cancer Article

Bone Metastases in Neuroendocrine Neoplasms

Bone Metastases in Neuroendocrine Neoplasms: From Pathogenesis to Clinical Management Publication.

The Role of Patient Support Groups

The Role of Patient Support Groups in Neuroendocrine Neoplasms Publication.